Information needs of patients with spondyloarthritis about their disease

Objective: 1. To describe the information provided to, or inquired about, by patients with axial spondyloarthritis and psoriatic arthritis. 2. To analyze improvements.

Methods: Analysis of the discourse of focus groups (with patients, some of them from patient associations, and rheumatologists). The discussion included the identification of elements that shape the reality being studied, describing the relationship among them and summarizing the results by: 1)thematic segmentation; 2)categorization according to situations, relationships, opinions, feelings or others; 3)coding of the various categories, and 4)interpretation of results. Representativeness was ensured by using a typological framework.

Results: Rheumatologists are the main source of information. Patient associations have a fundamental role and are well-regarded. Internet is used with caution due to its limited reliability. Patients are interested in: disease characteristics and treatments, the course and prognosis, and social, administrative and other kinds of support. More information is needed (objective and constructive, avoiding a catastrophic tone); it should be provided progressively, adjusted to patients features and needs. There are areas for improvement including: the standardization and updating of contents (based on scientific evidence), the optimization of informative materials (written, electronic), and other resources such as nursing and primary care.

Conclusions: Rheumatologists are the main and most reliable source of information for patients with spondyloarthritis and psoriatic arthritis. Patient associations have an important role and are well-regarded. Changes in the content, format and sources of information are required.